Family

How do we tell our family?

For the immediate family, parents must explain to the other children why, if it is so, they have seen some sadness or worry after the baby’s birth. With words right for their age, you must tell them of their little brother’s or sister’s illness. It is a good idea to let them say what they have to say on the subject, just as much as they will need your attention. If necessary, a psychologist or child psychologist (at a CAMSP, centre for early medicosocial action, for example; consult the Service-Public.fr website) may talk with the siblings or one of the children for whom it is difficult. For all that, don’t get ahead of yourself in imagining the problems. The priority for your home is to maintain its harmony – your child will be the first victim if that balance is upset.

How will this change our family life?

Any arrival of a baby in a home brings change, in terms of logistics and organisation. This particular child will need even more attention and care. Just because your child’s illness makes him different doesn’t mean your family’s usual life (outings, meeting people, common projects) will necessarily be upset. Brothers and sisters should maintain a normal life. The time taken for your special child’s different therapies must not be taken out of time usually spent with the others. He must have his place, but not more than his place.

Returning home with the newborn will be much easier if the parents take the time to prepare the others for his arrival, by allowing them to participate in putting the crib in place, showing them photos of the maternity ward (if the brothers and sisters have not been able to see a baby quickly transferred for treatment).These preparations will help them understand a little better and to welcome the infant joyfully.

The best place for your new child to flourish is within his family. It is sometimes recommended, upon leaving the maternity ward, to leave him with a day nursery. For some families, this lets them recharge their batteries without concern over treatments; at their own pace, everyone gets to know the new child who may worry them.

Mothers often focus on the newborn. This may be even likelier to happen with a fragile child requiring special attention. It is important that this not be to the detriment of the husband or other children. The father must also, so to speak, adopt this child.

How will it be when it’s time for him to move out?

Among all stages of family life, the moment when the adolescent or young adult finds himself alone with his parents in the house (his brothers and sisters having left to make their own lives) may be a difficult one, for both himself and for his parents. They should accept that one day they will separate from their child, who will remain longer than the others, so that he may build his own life, often with other adults with similar handicaps and the help of specialised teachers.

How can family and friends help with daily life?

The child will one day become adult, capable of doing many things by himself. Learning about daily life comes much more slowly than with others, but they also develop over a longer period. To help him move forward, don’t do everything for him.

He needs to feel surrounded by persons ready to help him and who believe in his abilities. Grandparents, uncles and aunts and close friends can be a big help to the parents. To fulfil their supporting role, those close to the family need to know how to listen to the parents, be interested in the child and get to know him. Inviting him alone or suggesting an outing can relieve the family, so to speak.

Time thus spent outside, teaching the Down syndrome child to be away from his parents, will allow him to have experiences different from those with the family, school or specialised establishment. Those who receive him will also get to know other sides to him. And what joy for the family to be together again in the home and tell each other what each has done!

How will we experience this birth in our family?

Within the family, a child depends on his brothers and sisters to develop. The arrival of a new child in the family may give rise to questions or behavioural changes. Be careful to not only help the Down syndrome child but also the others, by reassuring him that he has his place in the family. Be careful to allow siblings to express themselves on their brother’s or sister’s difference. Parents are often happily surprised by the reactions of the brothers and sisters. In fact, more easily than the adults, they see the child as a future playmate, a sister or brother already very much loved, aside from the illness. However, be vigilant and expect unexpressed difficulties, fears or even jealousy, and try to maintain a balance in family life.

What should I do when he misbehaves?

When your child misbehaves, you must be careful not to always take his side in a conflict. You must be fair. It is important to explain to your child what he can and cannot do. A polite, well-bred young person with good social behaviour will fit in more easily. Nothing prevents him from understanding and assimilating a good upbringing.

How can our family activities encourage autonomy?

In a family, you must foresee different activities for each. Your child does not always have to be helped by a brother or sister. He will learn slowly to be autonomous. If he must be helped, it is best not to always require the presence of brothers and sisters.

What do I do if I move?

Professional or other activities lead some families to move often or even change countries. It is possible even with a Down syndrome child. Speak to him simply, show him photos of the new house and his new room. If he is very attached to the old house, you can suggest bringing along a souvenir of his choice. You can reassure him that his things will be in the new house. The change may lead to a period of instability, restless sleep or enuresis (bedwetting). You must be very patient and close to him.

How can he participate in daily life?

You must not give up on having your child participate in family tasks, just as his brothers and sisters do, to the extent possible. At a responsible age, i.e. when you feel the child is ready for certain responsibilities, he must learn to put away his pajamas, to put his dirty clothes in the laundry basket, to clear his place, etc. You can help him by reminding him several days ahead of the different tasks.

He can be responsible in various areas of daily life: for things concerning him (washing up, dressing, undressing, etc.), for his immediate environment (making his bed, putting away his toys, getting his clothes ready, etc.), in his family environment (setting and clearing the table, etc.), outside the home (getting the mail, helping in the garden, etc.).

What responsibilities can I give him?

Each responsibility must be chosen as within his possibilities so that he can be proud in accomplishing it. Once he has shown what he can do, you must no longer do it for him. Each responsibility should be broken down into separate parts, each of which can be taught separately. For example, to wash his hands, he must: turn on the faucet, put soap on his hands, rub his hands, rinse his hands, shut off the faucet, take a towel, wipe his hands, put away the towel.

Dear Future Mom

Our newsletter

Institut medical office

About

The goal of the Jérôme Lejeune Foundation, a recognised public interest organisation, is to continue the work to which Professor Jérôme Lejeune, discoverer of Down syndrome, devoted his life: medical research on genetic diseases with intellectual disability, receiving and treating children and adults with Down syndrome or other genetic defects of intelligence ; in offering specialised medical consultation treating all their pathologies linked to their disease ; the defence of life, the respect for the patient's dignity, with a constant ethical focus and active solidarity, from the beginning of life until death.